Professor Simon Wessely says he is misunderstood

Full marks out of ten for missing the point and all I can say is don't fear research is at last underway without them - mostly overseas but the MRC belatedly started - we are in catch up situation owing to the delaying tactics of the psychosocialists. Seems like a last ditch attempt to make themselves respectable in ME despite their apparent supporters (who obviously have not had the misfortune to meet 4 Docs in A & E jointly agreeing "all in your mind" - a widely held belief amongst Docs and which the signatories fail to acknowledge.

You wrote: "While even one case of abuse is not excusable the reality is that these type of experiences are usually the exception and not the rule."

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The Tymes Trust Reports I have posted show that wrongful child protection investigations based on psychologising ME in children are NOT "the exception".

Whilst evaluation of evidence and its origins is wise, there seems to be some danger of dismissing high quality evidence.

One of the facts reported states that whilst MSBP/Child Protection Investigations in the wider population are 1 in every 100,000, the rates of investigations of families of children with ME runs at 7 in a hundred.

Is it being suggested that Jane Colby's Tymes Trust reports are not reliable sources???

You are being too kind. It is wagging the dog. So much has been written for so long, that it's all become a mess. Old meme's are still transmitted as if they were fresh examples of 'new' instances and 'evidence' of the whole. When they are not.

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"Too kind ?" now that doesn't get said about me on these forums very often

You are quite right of course and anti psychiatry is not the only cause to which M.E/CFS has been held hostage over the years, anti Vaccine, supplement marketing, and a whole raft of 'alternative' nuttery have variously attempted to gnaw at the bones of M.E/CFS advocacy.

Also, there's a very good reason why - what might seem to be a very frustrating term of avoiding an issue is employed - is used. That term being 'we cannot comment on individual cases'. Other than expressing my own abhorrance at the way in which this young kid was treated when it was reported - I adopt I am afraid the same practice in public.

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In the case of children - the 'no comment' is especially important. However far too often the 'we cannot comment on individual cases' response is used to avoid confrontation of poor practice - in the case of Eon Proctor he has been entirely willing to continue open discussion of his experiences as an informed adult. So there is nothing in that case to stop any professional with an interest, from commenting on the historic cirmstances. Of course none of that is likely to have any wider significance to M.E/CFS.

since it would naive of me to pretend that anyone who decides to look up my work “cold” via the internet, and not the journals, might stumble across some stuff that seems to be saying the opposite to what I have described above.

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This has involved their making a series of allegations portraying all of us as guilty of a vast range of nefarious conduct, and who are part of a spider’s wet of conspiracies, all designed to do down, denigrate and demean those with this illness.

This is a letter in support for SW from his colleagues. Thanks to Tate Mitchell for reporting this on Co-Cure. Do read the list of co-signatories. The letter is the second one down, its not clearly separated, all the text is kind of mashed together.

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Nice list Alex, all of them involved in making a good living out of the ME specialist ((ha ha) clinics and associated CFS research etc. What a joke the bunch of them are. If funding was taken away and put into biomedical research diagnosis and treatment. The same list would come up as 'looking for posts'. The big pot of money that is assigned to this crap in the UK beggars belief. Pity Malcolm Hooper didn't do a list, now that would be of real doctors

@ In Vitro Infidelium - please read the TYMES Trust reports links that I have posted.... as you appear to be in denial of the facts re the ongoing mistreatment of children with ME.

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“In denial” – where would you be without Freud ?

I’ve rather lost track of all of the fallacies that you’ve added to this thread, but the most egregious is that of conflating the particular with the general. Yes there have been individual cases where young people have been treated appallingly – this was not primarily a failing of M.E/CFS care, but a grotesque failing of mental health care for young people throughout the UK – it is what the CAMHS was developed to address, and which hopefully has begun to make a difference. The limited number of apparently M.E/CFS related cases that the BBC and Tymes Trust identified either in 1999 or since, does not amount to some grand generality of harm – it remains what it is an indictment of particular lapses in standards of care in particular circumstances.

Please note - that due to the secrecy of the Family Courts, it was only when mothers of cot death children were accused of the criminal offense of murdering their babies, and heared in open criminal courts, that the 'pernicious' 'theories without science' of Professor Roy Meadows (MSBP) were exposed to wider analysis and found to be dangerous. The mothers in those criminal cases were found to be innocent - the charges against them being one of the biggest medical scandals of our time.

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Family Courts are not ‘secret’ – they operate in closed session for entirely sound reasons. Again you are using the fallacy of conflating the particular with the general, the failings of Roy Meadows and the Court system that led to wrongful convictions do not have wider implications. Crap things happen and relation to Meadows the legal system has shown itself capable of adjustment. But the Meadows case tells us nothing about children and young people who may not receive the healthiest nurturing from their own families – this will remain a profoundly difficult area and it is absurd to believe that a claim of M.E/CFS can mean families are exempt from medical and social worker attention.

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An exclusive survey for the BBC's Panorama found that 60% of families of children with CFS were told their symptoms were a result of psychological problems.
ME children treated as mentally ill
Children suffering from chronic fatigue syndrome (CFS) are being pressurised into having psychological treatment which may not be appropriate, according to a BBC survey.
Some 25,000 children in the UK are estimated to be suffered from the syndrome, also known as M.E. (myalgic encephalomyelitis), and it is recognised by the Department of Health.
In a disproportionate number of cases, doctors had suggested that the children's parents had Munchausen's Syndrome by Proxy - a condition which causes parents to harm or fake symptoms of illness in their children in order to gain attention.
Some who had opposed psychological treatment for their children had been threatened with having them taken into care.
NB: 60% of 25,000 = 15,000. Please bear in mind the figure 25,000 is a 1999 figure. New cases of ME/CFS are diagnosed every week.

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The figures:

(1) No one knows what the prevalence rate of M.E/CFS is in under 18s (16 is often a service level boundary point) in the UK. The 25,000 figure appears justified as a calculation of 10% of the estimated 250,000 total prevalence.

(2) 60% of a derivation from an estimate equals what ? However one employs mathematics, no meaningful answer can be arrived at, it’s just heaping uncertainty on top of uncertainty.

(3) Incidence (new cases) does not of itself equal increased prevalence – with an age limited measure, even if recovery or death do not occur, the patient gets older and passes out of the count. For increased incidence to lead to increased prevalence, incidence has to surpass the combined recovery and death rates, or otherwise the rate of aging in the patient population if the measure is age limited.

(4) 60% of families: That is 60% who responded to a survey – self selection in such a case favours a highly biased contribution set.

The claims:

(1)
(a) 60% of families of children with CFS were told their symptoms were a result of psychological problems. >
(b) Some 25,000 children in the UK are estimated to be suffered from the syndrome, also known as M.E. (myalgic encephalomyelitis), and it is recognised by the Department of Health.

A gross false equivalence is presented – the diagnosis given at (a) has no quantitative relationship to (b). A reasoned deduction of what is stated at (a) is not that 60% of the survey reported children wrongly diagnosed – but that 60% of the survey consisted of parents with children who been given a diagnosis of mental ill health – while the parents preferred their own diagnosis of M.E .

(2) Children suffering from chronic fatigue syndrome (CFS) are being pressurised into having psychological treatment which may not be appropriate, according to a BBC survey.
This is a circular and semantic proposition. If the diagnosis is one of psychological ill health, then psychological treatment would be appropriate and pressure would not be an issue it would be a matter of medical responsibility for the health professionals (as required by law) to ensure that a young person was given the best treatment available.

(3) In a disproportionate number of cases, doctors had suggested that the children's parents had Munchausen's Syndrome by Proxy - a condition which causes parents to harm or fake symptoms of illness in their children in order to gain attention.
If true this should be a source of continuing concern because of the very narrow reference frame of the legitimacy of MSP diagnosis – but this is not a specific M.E/CFS issue and burying it within M.ECFS is unlikely to achieve clarity for anyone.

(4) Of all the (disproportiately large numbers of) families of children with ME being subjected to unneccessary child protection investigations over decades, not one case has been proven or accepted as cases of abuse. ie the children were officially accepted as medically ill. But only after horrendous legal battles.

Where do these assertions come from – none of the Tymes Trust material states how many people comprise its survey panels, so by what definition is disproportionate arrived at ? In fact nothing in Tymes Trust work appears to have quantitative validity.

@ IVI -....I do suggest that you send your post to the Tymes Trust, so Jane Colby can address/refute your 'egregious' dismissal of high quality evidence. Or is it the case that you feel confident to refute the Tymes Trust Reports on a internet forum, but do not wish to take your dismissive assertions to the Authors of the Reports???

IVI said
"it is absurd to believe that a claim of M.E/CFS can mean families are exempt from medical and social worker attention"

Okay so you're talking about children in this respect but is it so difficult to extend to Adults? I would like to see what medical and social worker attention we would get with this diagnosis unless we were housebound and unable to do basic hygiene or heat a meal. You would be bottom of a very long list. Quietly amongst the professionals I suspect this is so. No its not conspirancy theory, its based on my experience and anecdotel, from patients on these forums and elsewhere. I believe if there were questionnaires for us to complete about our treatment the results would be staggering on the inadequacies.
If you believe otherwise then you haven't had the typical ME treatment offered in the UK.

@ IVI - ....I do suggest that you send your post to the Tymes Trust, so Jane Colby can address/refute your 'egregious' dismissal of high quality evidence. Or is it the case that you feel confident to refute the Tymes Trust Reports on a internet forum, but do not wish to take your dismissive assertions to the Authors of the Reports??? .

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That would suggest I consider the Tymes Trust reports worth further investigation (it's historic and stays as what it is, I can't see that it can take us anywhere. If TT have the relevant quantitative data available, and someone such as yourself wants to use the TT material in the way that you have, then it's for you to ask the TT to publish it. If the data is already in the public domain please give a link - I'm entirely happy to correct my view.

As qualitative material the TT stuff seems to stand just fine it just doesn't do what you seem to want it to do. In very simple terms - unless one knows the number of the survey panel and how that panel was selected, no deductions can be made from the material. The material tells us that certain things 'have happened' but the data doesn't allow for the extrapolations that you've made. The problem isn't the TT reports (so long as the limits of their scope is recognised), it's what you've tried to make from them that is at issue. At least have the good grace to acknowldge where you are wrong and to not seek the defence of the references which you've used inappropriately.

IVI said
"it is absurd to believe that a claim of M.E/CFS can mean families are exempt from medical and social worker attention"

Okay so you're talking about children in this respect but is it so difficult to extend to Adults? I would like to see what medical and social worker attention we would get with this diagnosis unless we were housebound and unable to do basic hygiene or heat a meal. You would be bottom of a very long list. Quietly amongst the professionals I suspect this is so. No its not conspirancy theory, its based on my experience and anecdotel, from patients on these forums and elsewhere. I believe if there were questionnaires for us to complete about our treatment the results would be staggering on the inadequacies.
If you believe otherwise then you haven't had the typical ME treatment offered in the UK.

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So - your concern is that the parents of young people with M.E/CFS receive unwanted attention from healthcare professionals and social workers, while adults with M.E/CFS don't receive adequate attention from healthcare professionals and social workers ?

I wouldn't disagree that the later is true - though there is little that healthcare can currently offer, and I certainly wouldn't (at least not without extensive evidence) accept that M.E/CFS patients are discriminated against in terms of social care. Social care is under massive contraction for everyone in the UK and IMO we are subject to an equality of misery.

There is no equivalence between social services targetted at non vulnerable adults and social services for children. Everyone understands that critical parental failings occur and that the State via social service professionals has an intervention role. This will always be an area of huge difficulty and mistakes will occur; what we have to argue for is the best available assessment and treatment of children and adults - but the two are never going to be equivalent for what are surely obvious reasons ?

'This document describes the disease of Myalgic Encephalomyelitis,contrasts it with Chronic Fatigue Syndrome and explains why youngpeople with ME are commonly misunderstood as being abused orneglected by their parents, or as lacking mental capacity to know theirown minds and make decisions affecting their lives.It was written at the request of the Official Solicitor as a Judge’s briefing...

The only reason Wessely is still a target at all is because he makes himself one by talking to the media. By his own statements he is no longer involved in ME/CFS. I think we should treat him as being as irrelevant as he is, and select a better poster child.

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So he only has himself to blame. Wessely is a justifiable target - but no longer a 'useful' one ? So who is it you would like the SMC to start a campaign of protection for next ? I don't see how your attitude does anything other than favour goin taking M.E/CFS advocacy in a direction that is wholly oppositional and inevitably attracting some very unsavoury fellow travellers. Bunker campaigning of the most useless kind - unless one is running a cult that is.

So - your concern is that the parents of young people with M.E/CFS receive unwanted attention from healthcare professionals and social workers, while adults with M.E/CFS don't receive adequate attention from healthcare professionals and social workers ?
No - children with ME/CFS receive inadequate attention most of the time as do adults, we are dismissed as malingerers by A & E depts when we have ME on our records - but some unfortunate children receive too much attention of the wrong sort, that being of the psych input.
And as to the social care system, well that will have to do another day

The other poster said "quite a few" and didnt say "large population". This has been happening ALL OVER THE WORLD for the past 20 years and still happening today. A current example of ME people being locked away with their ME/CFS ignored is the case of Brian in England, who is currently still detained against his will.

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Some evidence would be good - from the UK or anywhere else. Taking reports from an internet forum about one individual is no basis to come to any conclusion about anything. The position in the UK regarding inpatient mental health care for adults as almost as dire as it is for the under 18s - the chances of a scarce resource being used for someone who is neither a danger to themselves or others, let alone alone the excercise of detention under the mental health act , is extremely slim. If the argument is that inpatient mental health care is poorly equiped to deal with comorbid physcial illness, that is undoubtedly true - but not in anyway specific to M.E/CFS. None of this is an argument against psychiatric care - it's an arguement for better psychiatric care. An M.E/CFS focus to that will not be helped by inacurate characterisations of real problems or the presentation of fantastical ones.

(1) No one knows what the prevalence rate of M.E/CFS is in under 18s (16 is often a service level boundary point) in the UK. The 25,000 figure appears justified as a calculation of 10% of the estimated 250,000 total prevalence.

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For the curious;

There has been one community based estimate (13-17, USA) - 0.181%, one primary care based estimate (10-18, Netherlands) - 0.111% (including a 1 year incidence estimate - 0.012%).
There have been two long term followups #1 - mean of 4.6 years (Australia) - 50% reported recovery, and #2 - 13 year follow-up (USA), 37% reported recovery.

So he only has himself to blame. Wessely is a justifiable target - but no longer a 'useful' one ? So who is it you would like the SMC to start a campaign of protection for next ? I don't see how your attitude does anything other than favour goin taking M.E/CFS advocacy in a direction that is wholly oppositional and inevitably attracting some very unsavoury fellow travellers. Bunker campaigning of the most useless kind - unless one is running a cult that is.

The malicious, they pointed out, are in a minority. The abuse has stopped completely. I never read the
activists’ blogs, but friends who did told me that they claimed to be “confused” and “upset” - possibly because their role had been switched from victim to abuser.